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Small Cell Diagnosis


D iane

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Hi Diane,

Sorry to hear about brain mets.  This disease is mean.Hope the steroids and radiation help.

We aren't scheduled for a MRI in the near future.  We will have a scan after 2 more cycles of the irinotecan.  Although, hubby is not tolerating it well and moral is low.  

We are in Massachusetts, our stay at home order has been extended to May 14th.  The silver lining is more time together.

just me

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Diane- I am sorry to hear about the progression into your husband's brain. I hope that the radiation does the trick like it has for so many others. 

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Diane

 I’m so sorry to read the latest on your husband’s condition.  My prayers are with you and your family and I’ll keep watching here for any news.  
Lou

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Thank you, all.

Just returned from the hospital for his radiation set up.  He will have 10 treatments starting Monday.  I do think this will push back his next chemo, I am going to ask.  Feel so bad I cannot go in the medical bldg. or hospital with him.  At least as long as he doesn't require assistance, which right now he doesn't.  Hopeful this treatment will at least kill the mets and give us a little more time, like months!!!  We'll see.

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  • 2 weeks later...

Hi Diane ... sorry I haven't posted in awhile and am sorry to hear about the brain mets.  I see husband is getting WBRT ... has he started yet?  My wife will be getting hippocampus-avoidance PCI (similar) in a couple of weeks for 10 days.  How many brain mets did your husband have?  The reason I ask is that some radiation oncologist prefer SRT if less than 4 BM.  Although it may be different with ES-SCLC.  For LS-SCLC, my wife's brain radiation oncologist prefers PCI/WBRT regardless of BM during the first-line treatment and if BM shows up later in small amounts, would perform SRT.

Steve

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Hi Steve.  If my husband would have responded better to the 1st line treatment for a time, he could have had the preventative radiation (you got the technical term!) which they say helps greatly with NOT developing brain mets.  I hope this will be the case with your wife.  He started last week and we have this week to go.  He is very weak, sleeping a lot and he does not want me taking care of him.  It makes him feel like an invalid he says.  Yet, I have to.  I have to make sure he is taking meds on time, and that I can ease his suffering a bit.  When I read the brain CT he has 15 mets.  I don't know if that's considered a lot but it seems like it is so.  I saw him cough up a little blood this morning.  I am a nervous nelly despite so far no cognitive dysfunction from this treatment.  He has to take memantime at different doses over 4 weeks.  Plus the steroid 2x.s a day.  Dexamethodone 4mg ea. Can only hope he can get thru it and we can go from there.  Going to be a very trying couple of weeks.

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  • 3 weeks later...

D iane,

I am sorry to learn this news and I'm sure you are devastated. Thank you for remaining by his side and caring for him as he endured treatments. My wife's caregiving was of vast comfort to me and I'm sure your husband held the same view.

I have no magic words. Lung cancer sucks. Small cell sucks squared. I am praying for your peace.

Stay the course.

Tom

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Silver lining was covid-19.  Working from home we got to spend more time with him.  Towards the end though, I couldn't do anything right.  He would shoo me away.  I know that I did good, he was just starting to decline and suffer.  After the brain radiation was complete, he started to get really bad.  I did everything I could to keep him out of a hospital setting. He had an appointment with the MO on Thursday and as soon as he saw him, checked his blood oxygen, and breathing,  he called an ambulance.  It was 78 or 79%, he was in afib,  yet I had him standing in the shower before the appt. rinsing him off.   I wonder if the Doc thought -What is she thinking?  He was so weak but aware and I believe still fighting.  We thought that visit would have been "the talk" visit.  We were not set up with hospice or any type of home care yet. 

So, we could not go into the ER.  Once he was admitted I was allowed to visit him on the critical care unit.  They said for an hour or two, but the nurses were great and Friday and Saturday I was there for more like 4-5- or 6 hours those days.  He gave up sometime Sat. night.  I tried to get the night nurse on the phone before the end of her shift and was told she was in the room with him, to call back after shift change.  They then told me it was OK to bring our children in as they saw it was time.  So glad they let us in for the special circumstances and we were by his side when he passed.  He died from respiratory failure, had pneumonia in the left lung.  That was the good lung, go figure.  As we well know, lots of people die more so from the complications of the treatments trying to fight the cancer.  To me, that's a little encouraging.  We need better and safer treatments!   Perhaps maybe in my lifetime there will be a cure to all cancers.

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Diane,

I am so sorry ... . I  wish I could hug you, and help you cry.  He fought a good fight.

Prayers for healing.

Cindy

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D iane 

My heart is breaking for you.  You were such a phenomenal caregiver, companion and wife.  Your husband was so lucky to have you by his side.  I pray for you and your family to have peace and strength in the days to come. 
Lou

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I’m so sorry for your loss.  Our condolences to you and your family.  Thank you for being such a wonderful contributor to this group, know that we will be here for you going forward.  
Michelle

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Hi D iane,

I am so sorry for your loss. I saw your post earlier in the week and was uncertain what to say, as I suspect many feel similar. Please forgive my tardiness in expressing my feelings. I have followed your posts, including reading the ones posted before I became a member. Your posts have helped me focus on my wife's cancer. With the limited number of SCLC cases on here, I suspect we read and reread everything in detail. Please know that I appreciated your willingness to post on this forum.

Thank you ... Steve

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  • 11 months later...

Bumping this up as I just re-read this whole thread.  Coming up on a year, things are so different.  We are doing fairly well with adjusting.  I did start on a low dose anti-depressant after 9 months of thinking I could do it without.  It is a help.  We miss him.  I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone.

The SCLC section is not very active, and we all know why.  It is a bit encouraging that there are some new studies (like identifying sub types) underway.  It is such an aggressive disease.

https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies.

https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php

 

Take care everyone, I thank you for all your support.

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Hey, Diane, good to hear from you, and glad to hear you are doing OK. You'll never stop missing him, but I was eventually able to get to a point after losing my mom where the happy memories overcame much of the pain.

Your continued input here is invaluable--when there are relatively few long-term survivors, those who have lost loved ones can help keep their voices alive to help others.

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Hi D iane, sending you a big hug.  I agree with what LexiCat mentioned above.  You are always welcome here.  Your experience as a caregiver is so valuable to caregivers now.  We do have a LUNGevity Legacy Facebook Group for those whose loved ones have passed away from lung cancer: https://www.facebook.com/groups/51580140634/permalink/10165124375825635/

And if you would like to advocate for lung cancer, there are many different ways you can get involved: https://lungevity.org/for-supporters-advocates

Keeping you in my thoughts.

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I'm glad to hear you're feeling better. Loss is hard and feelngs of grief can come and go for a long time. Bless you for everything you did for your husband.

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  • 1 year later...

Hi. 

I still lurk around here once in awhile even though it's 2 years later.  We still miss him greatly.  So sad to hear about Lexie.  I didn't know what to post, so I didn't post anything.  I mainly read.  Hope you don't mind me bumping up this old thread, but around his anniversary it is like an honor to him, and to all of you who were here for me with support.

Trying to finish a 450 sq. ft. cottage down on the Chesapeake that he built.  It had 4 walls, a roof, windows and doors and one of the last times we were there together he was underneath running water pipe.  We hope to have some more done by his birthday in July.  I'll see if I can post some pics.

He actually built two.  First shot is the before.  he demolished the old ones.  Ours will be the one on the left side.  It's under a nice shade tree!  

Beach shack.JPG

Bay.jpg

7.4.21 bay2.jpg

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Hi Diane,

I am fairly new to this forum having been diagnosed with LS SCLC in Nov 2021. I have read your previous posts and so sorry for the loss of your husband. The cottages are  looking nice and what a beautiful spot.

Pam

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Hi Diane,

I have read all of your posts more than once.  My husband has SCLC Extensive.  Thank you for your continued support for helping others.  The cottage is beautiful.  I hope you can conjure up the good memories when there.  

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  • 11 months later...

Tomorrow is 3 years.  Still get a little emotional at times.  Don't like being alone.  I do have lots of family and friends around which keeps me social and helps with the loneliness. The cottage still isn't finished.  I'm taking the day off tomorrow to go down and do some work to keep myself busy.  Hope you guys are doing OK, I haven't been around in quite a while.

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